... the rest are covered with hair.
This is the sign that greets you as you walk onto Borchardt Ward at Pendlebury Children's Hospital in Manchester. Only, when you walk past it for the first time you have no idea how that statement will stay with you for the rest of your life.
My beautiful 14 month old daughter was developing into a clever, funny, intelligent little girl. She could walk, talk, understand and soaked up experiences like a little sponge. The only flaw was that she seemed to have a very distended tummy. I wasn't unduly worried and put it down to 'puppy fat' as she was showing no symptoms of illness although, after a chat with my mum, I agreed to mention it the next time I went to the Baby Clinic meeting (at the local Heath Centre) for a weigh and measure.
June 30th 1992 - Genesis
My Health Visitor was a warm, approachable woman and I was glad that she was leading baby clinic today. I signed in, waited my turn, took Rachel up to be weighed and measured and quietly mentioned her swollen tummy. The Health Visitor had a little feel around and told me that they had a baby doctor at clinic that day so I could go through and see her. I waited a little while longer and walked through to the surgery.
The doctor was one that I recognised from our GP's practice, but not one that I'd had to go and see at any time. However, she was lovely, put me at ease and proceeded to examine Rachel. She said that she thought she could feel a 'growth' in the stomach area but would prefer a second opinion. She checked who our regular GP was and went to find him. We were taken through to the GP's surgery, he also examined Rachel and said that he too could feel a 'growth'.
He explained that he would like to get this 'growth' checked out and attempted to ring a colleague at the local hospital but there was no answer on the telephone. He asked if we could return the following day when he would have had more time to make proper arrangements for us. He explained that I would probably have to take Rachel to the hospital for an examination but he remained calm and unflustered so no alarm bells were ringing in my very naive 20-year old head.
I returned home and tried to explain the afternoon's events to my partner, Kev (Rachel's dad). We were both confused by the interest in the mysterious 'growth' but, as no-one had panicked, neither did we. Don't forget - this was years before internet access was available in almost every home and never did it cross our minds to contemplate the events that were about to take place.
1st July 1992 - the day my life changed forever
I returned to the GP's surgery the next day at the pre-arranged time of 2pm; the waiting room was empty and the receptionist was just about to explain that surgery was closed but the GP came out of his room and waved me over. I had Rachel in her pushchair and we went through to the doctor's consulting room. He explained that he had tried to get in touch with a colleague at the local hospital but had failed so had arranged 'immediate admittance' to Royal Manchester Children's Hospital for Rachel and we needed to get there as soon as possible. We were given a sheet of paper with hospital information on and directions of how to get there. The GP told me that if I hadn't managed to arrange to get to the hospital by 6pm he would arrange ambulance transport for us. Looking back now, I remember the expression on his face was one of confusion and sorrow. I should have known then, shouldn't I?
Tiny alarm bells started ringing. Why Manchester? Why so quickly? Ambulance? We had no transport so I rang my dad and asked if he could take us over. He was working 100 miles away in Birmingham but after a quick run down of the afternoon's events he said that he would set off immediately, nip home for a bite to eat and then come and pick us up. We ran round the house packing over-night bags for Rachel, myself and Kev and dad arrived to take us to Manchester at 5.30pm.
When we arrived at the hospital we had no idea where we were heading. There was one main corridor with six wards leading off it. A long, foreboding corridor which echoed every footstep. Borchardt ward is at the very end of this corridor and it seemed to take an eternity to find the correct door in this new and unusual environment.
We arrived at the door of the ward, opened it and stepped inside. This new world was full of machinery, unusual bleeping noises, crying, high ceilings, curtains drawn round beds, people moving about - smiling both knowingly and sympathetically. Dad held back. I turned to him and he said, "I've got to go love. Ring us when you have some news." He turned and walked away. I thought he was deserting me (he wasn't. I found out a few weeks later that he had guessed what was going on but didn't know how to support me or say the right thing).
All around us were children with bald heads, wired up to constantly bleeping machines - still I didn't twig what was going on. We were greeted by a lovely staff nurse and she introduced us to the doctor on duty that evening. They explained that they were going to examine Rachel and look at the GP's notes that they had been sent by fax. They reassured us and said that we would be able to stay with Rachel all the time. The usual examination process took place; a physical examination of her tummy, a routine blood test (we were soon to find out that the word 'routine' meant exactly that - all this was soon to be part of her life), temperature, height, weight... There was a bit of discussion between the doctor and the nurse in hushed tones, scribbling on a clip board and after about 45 minutes we were invited into a side room whilst a nurse looked after Rachel for us.
"We have some bad news. Rachel has Cancer. We are unsure what type at the moment but we need to carry out some tests on the growth over the next few days to determine the best course of treatment blah blah blah... "
I couldn't hear any more. Kev was crying, I was being bombarded with words that included, 'operation', 'biopsy', 'tests', 'treatment', 'saline', 'rare type', 'two growths' ...
"I've got to see Rachel"
I was numb. I did not know what was going on. I needed to take control. I walked out of that room, walked to to the cot where Rachel was playing happily with some toys from the communal toy box, scooped her up and held her tight. She struggled to get out of my grip to continue playing with the 'new' toys. I placed her back in her cot and told Kev that we had to tell our parents as I knew they would be waiting for news.
We phoned my parents first and mum answered the phone. I told her what the doctor had explained to us and she was dumbstruck. She wanted to know how a diagnosis had been made so early as we'd been at the hospital for such a short amount of time. I explained that I'd know more over the next few days, gave her the ward telephone number and arranged to ring later that evening. The phone call with Kev's parents was much in the same vein - shock, bewilderment, confusion.
We went back to the ward and were told that Rachel was being prepared for an emergency body scan (which would show where the growth was) and a biopsy (keyhole) operation the following day. She was nil-by-mouth from midnight. How do you explain that to a 14-month old baby? We set up bed-chairs next to her cot and settled in for a long and restless night.
The next couple of days were just a string of tests, scans, the operation (the biopsy), more blood tests, a first course of general chemotherapy and finally, a definite diagnosis. We were again ushered into the side room. We now knew that this was the 'bad news' room and had seen a number of other parents guided in and out of the room - odd, bemused expressions on their face on the way in, utterly devastated, crumpled faces when they came out - we must have looked like that. We were told that Rachel's Cancer wasn't as rare as they originally thought but it did need urgent attention. The tumour was on the left hand side of her body and was fairly large - the size of large orange or an adult fist - and was pushing all her internal organs over to the right hand side of her body. This type of Cancer was called Neuroblastoma - cancer of the adrenal gland - and was typically a type of Cancer that represents itself in children. We were told that she would finish her current course of chemotherapy (three days) and she was booked in for an urgent open biopsy on 12th July.
"We're getting married on 11th July. I'll have to tell people."
I can't believe I said that. Like it was more important than any thing else that was going on at the moment! It's funny what goes on inside your head. However, this lightened the mood slightly and we were told that as long as Rachel's condition was stable for the next few days that she could be with us for the day of the wedding. We didn't need to cancel anything.
- The original consultant had not been available
- A (more experienced) consultant had been paged and ended his holiday early to conduct the operation (Mr Adrian Bianchi)
- The operation had not gone to plan
- The open biopsy was not possible as the tumour was starting to break up and spread
- The tumour had been removed, along with the adrenal gland and half of the left kidney
- A Hickman line had been sited in her back. fed into her jugular vein and down into her heart
- Chemotherapy would be administered for six months as a back-up precaution
- The next 48-hours were crucial
- She was on five drips: saline, glucose, morphine and two others.
- She had a stomach drain attached to the recently sewn-up operation site
The next week is a bit of a blur, to be honest. I knew that a consultant had been booked for the operation. I'd had my dress fitting and it was just waiting to be collected from the store. Rachel's bridesmaid dress and accessories had been bought and were hanging up at home. All we had to do was to arrange a suit for Kev. We had a couple of days at home but the majority of the ten days was spent either on a train or in a car travelling to and from Manchester or on the ward wondering what the future held for us all - far too much thinking time. Everyone wished us well and kept their fingers tightly crossed. I think it worked because we left the hospital with Rachel on the afternoon of the 10th of July with STRICT instructions to return by 7pm on the 11th July as the operation had been arranged for 8am on 12th July. And we got married - an emotional day for obvious reasons with all wedding toasts directed to one very special, brave girl (not me).
We returned to the hospital, dropped Rachel off and spent our honeymoon night in a little B&B a couple of miles across town. We returned the following day and waited for her to come out of the operating theatre. And waited. And waited. She was wheeled back on the ward with five drips attached to a Hickman line. The consultancy team followed and we learnt the following:
We were not able to hold her as she was in so much pain. She did not want me anywhere near her, screaming at the top of her voice whenever I went anywhere near her. Can you imagine how felt? How helpless and useless did I feel? She would, however, let her dad hold her whilst she lay on a pillow.
We had a stream of visitors over the following week and we were all worn out. My parents came to visit one afternoon and, as they were leaving, I said I'd walk down the corridor with them. We were chatting about what the next few days held and my dad just turned around, hugged me, said, "Oh Nicola. I'm so sorry" and started sobbing on my shoulder. Big heaving sobs. I followed suit and couldn't stop. For about three days. Until then, I hadn't shed a single tear. I'd propped everyone else up and dealt with the 'important' things. Seeing my dad cry triggered the feeling that this really was a serious situation for I had only ever seen him cry twice before in my life - when each of my maternal grandparents had died.
Rachel was supposed to be on complete bed rest for the next two weeks but fought so hard against the morphine that they had to reduce the dosage and let her do what she felt she was able. How do you make a baby understand that they are supposed to be resting. The medical staff were amazed that she wanted to be up, playing and we are all convinced that this aided her post-operation recovery process. After five days we were allowed to bring her home for a couple of days.
The next few months were a three week routine of chemotherapy, good week (where Rachel was generally a 'normal' toddler), bad week (risk of infection, raised temperature, mercy dash to the hospital for saline/glucose/platelets drip), chemotherapy, and so on. Rachel started to lose her hair the week after our wedding so we went to the hairdressers and had it all shaved off as she was forever finding clumps of it and shoving it in her mouth. Our lives were in limbo but we attempted to continue to do family things; little things like a shopping trip were emotional as people would invariably stare at our beautiful bald-headed little girl. Some were brave enough to ask and we were happy to explain, some looked disapprovingly, some refused to look at us as though the disease was infectious. There were continuous tests, monitoring the effects of the chemotherapy, action taken by a dietician when Rachel's mouth was too blistered to eat, we made friends with other parents on the ward, the nursing staff became our second family, we mourned when we heard that children from the ward had been beaten by the bastard disease. We learnt to live with what we had, supporting others in similar situations, comforting other parents who had recently been dealt the horrific blow that their child had Cancer, learning how to sleep upright in a chair with only a thin blanket as a cover, knowing what each differently-toned bleep of different machines meant, learning the meanings of long words and just getting through to the end of each day, ready to start over again the next.
24th December 1992 - The end of the beginning
Rachel had her last course of chemotherapy on 21st of December 1992. Whilst the drugs were being pumped around her body, we were called into the side room once again and given the news that we had waited six long months for.
"Rachel is officially in remission from 24th December. We can find no traces of the tumour any more... blah blah blah"
I didn't need to hear any more. My baby was cured. No Christmas present has ever come close to that announcement.
1st January 1993 - The beginning of the end
Of course there were more follow-up appointments, each one tinged with the worry that the Cancer had presented itself elsewhere in her body but we were one of the lucky families. The time between the check-ups slowly lengthened... two weeks, one month, two months, three months, six months, a year... until she was sixteen years old and had to go no more. Finally she really did have the all-clear.
* * *
Editors note: This is my story - the first in a series that I have called "Cancer - Your Story". If you are interested in sharing your story please click on the link and contact me.
Neuroblastoma - http://en.wikipedia.org/wiki/Neuroblastoma
Royal Manchester Children's Hospital - http://www.cmft.nhs.uk/
Mr Adrian Bianchi - http://www.cmft.nhs.uk/saint-marys/our-consultants-details.aspx?ConsultantID=38
Cancer Research UK - http://www.cancerresearchuk.org/
Photo credit: D Sharon Pruitt - Pink Sherbert Photography